Rachel Siewert (WA, Australian Greens) Share this | Hansard source

There was multiparty support for the NDIS legislation when it went through this place and for the ongoing work of the NDIS, and in fact there continues to be. But that doesn't mean that we shouldn't be scrutinising the NDIS and calling out problems when we see them. Tonight I am going to read out some accounts from people with disability who have tried to access the NDIS or, in fact, are accessing the NDIS, and also some accounts from carers who have been trying to access the NDIS or have been having difficulty making their plans work. I'm doing this because there are a lot of frustrated people out there who feel voiceless and who have asked that attention be brought to the fact that there are problems and that people are, I think it is fair to say, feeling traumatised. I should note that, given people's depths of feeling, there were some unparliamentarily words, which I will omit. The first person states:

I've just gotten off the phone from NDIA, and I'm fuming. We have basically been told that the whole time our funding has been in place, since 2015, our plan has been incorrect and showing the incorrect amount of funding. We have a current plan that covers eight months and shows around one-fifth of the original balances. When I questioned why no-one has ever notified us of this fact, I was told that, because of their high workload, sometimes these things get missed along the way. Also, there has been very little case notes logged against my son's files to reflect the amount of time and the questions we have asked surrounding his plan and the budget. My son is 13 and severely autistic, with severe developmental delays, and is non-verbal and fully incontinent. Yet it is expected that, because of his age, he can be left to his own devices for a period of time should I wish to return to work et cetera. Excuse me—I've had enough. Who do I contact in—

a state—

regarding a complaint and taking this further? This treatment is disgusting and the woman from the NDIA who kept cutting me off mid-sentence needs a wake-up call.

Another person says:

I just got phoned up saying I didn't get NDIS. I have PTSD, bi-polar, bulimia, and cut and other things. I just don't know what to do. My helper says they shut down soon so there will be no-one to help me anymore. I am just too tired to keep going. I hate NDIS. I was so happy when I got told I could get more help, and was going to go to tech and everything, get away from home and stop being hurt all the time.

The next one relates to a gentleman caring for his wife, who was diagnosed with younger onset dementia at the age of 55. His wife required a power bed to ensure that she was able to be provided with care in her home, and they submitted an application for this bed through SWEP in November last year. A hospital provided the hire of a bed for three months, but, despite the application being placed on the urgent list, they received a power bed through this program only recently, in August 2017. So they've only just got the bed, even though they applied a while ago. The gentleman involved has had to pay the cost of the hire bed, which has amounted to over a thousand dollars since the start of the year, and that was after being provided with different information on several occasions. He has been informed that his wife's NDIS plan covers only the purchase of a bed, not the hire of a bed. As my editorial, what was he supposed to do when he needed this particular bed and there was a significant delay in getting a purchased bed?

Throughout this process, this gentleman's wife's support coordinator made several attempts to liaise with the organisation that provided the hire bed in order to have invoices sent directly to the NDIS and not to him, but these requests and instructions were ignored. Then he got phoned by the company, threatening to come to the property to remove the bed if he did not pay. This was obviously distressing and confronting, and without the power bed he would not be able to provide care for his wife in his home. He subsequently paid the invoices. The gentleman concerned has conveyed great concern surrounding the NDIS including the NDIS plan lacking visibility in relation to details of funding allocation; being told that the allocated budget was approved to fund a purchase of a bed but not the hire of a bed; a general experience of receiving mixed messages from NDIS representatives when seeking clarification on matters relating to the plan; taking invoices into an office to claim for reimbursement—reimbursement will be provided but isn't in fact provided; and the apparent of lack of flexibility on use of funds in a plan, despite the plan stating that 'funds in your core support budget are flexible, which means that you can choose how to spend this funding to meet your needs'. Instead, he can't choose to hire a desperately-needed bed; he has to purchase a bed—failure to provide choice and control. Isn't that the very basis, we are told, of the NDIS? His final concern: the failure to ensure that his wife isn't any worse off for participating in the NDIS.

The next account:

I just want to say that today I did a pie chart of the things in my life and how much I spend doing each thing. And it made me very angry that there was a category called NDIS - and it took as much up of my pie chart as did the time I spend on appointments and everyday tasks (the 3 biggest things I spend the most time acting on or thinking about things I have to do). I spend less time accessing the community, spending time with friends and family than I do with actually dealing with NDIS issues. This is so counterproductive of that the scheme is supposed to be doing!

The NDIS should not be affecting my life like this. I cannot go a day without all my issues with the NDIS that are constantly not being resolved going through my head taking up space. I could actually be using this time and space to be building my life. Instead I'm spending the time trying to fight for the right to build my life. It should not be this way!

I concur.

For the next account there is a rather long explanation of the problems that this person has been going through with the NDIS. I don't have time to go all the way through it so I'll read out part of it.

Where on earth do we go to from here?! I am just completely broken by this we had so much hope for a new system which would give us freedom to help our daughter in the way we saw best and we were promised that our plans would be individualised and based on her needs and it could not be further from the reality. We are far worse off and left to navigate a failing inconsistent system alone and it's almost broken me I considered myself a good advocate for my child and going into this I felt confident and fairly knowledgeable and thought that this would help me negotiate a fair and individualised support plan for my child, I believed that we would have far better access to necessary equipment and assistive technologies which would be available when the person with disabilities required it rather than the long wait times that state funding previously had in place, we were told that the funding would be available when equipment was needed yet the reality is the exact same process of having to submit requests for equipment that now are handled with huge inconsistencies and a complete lack of any guidelines and often means families are spending up to 10 hours trialling and submitting requests for one piece of equipment which in our case comes from our therapy budget as we have not been given stated supports for equipment trials and reviews so on average we spend $1500-$3000 just on this then often they refuse to fund the request after all that or ask for more information. We literally can't afford to even do one therapy weekly let alone the 5 regular therapies she requires and previously accessed under ADCH, the vast majority of our 'Therapy' budget has been spent on this ridiculous process of never ending hoop jumping.

This has been a devastating let-down for so many families, careers and people with disabilities.We have to get this system right. This cannot continue. And all we get from the NDIA when we ask questions is platitudes. It has to be stop. It has to be fixed.

Senate adjourned at 19:49